Technology and It's Impact

As a lover of science, technology, and even science fiction, I was amazed when I heard about the genetic test in development that could help to identify nearly 3,000 medical conditions - before the baby is even born.   It is being touted as non-invasive to both the parents and the fetus.  The science lover in me is in awe of people who are capable of developing such sophisticated technology that can examine and decipher the mysterious conditions of the human anatomy.  As a parent of a child with developmental and medical issues, I am torn by reports of this new technology.  On one hand, I find its possibilities exciting.  On the other hand, I find its potential uses frightening. 

The source of my son's developmental issues has never clearly been identified.  Would I like to know what caused his issues?  Definitely.  A clear causation may bring a measure of peace.  At the same time, by knowing the source of his condition, what questions or issues may that raise for our family?  If it is genetically based, our son will need to question the ethics of having children of his own someday.  Would he want to bring children into this world who may, or may not, face many of the same issues that he has had to weather.  Additionally, just knowing that my husband and son both share a minute chromosomal duplication was hard for my husband to come to terms with.  For a long time, he felt responsible, even though the doctors don't feel that is the source of our son's problems.  If it were clearly identified that one of us was the source of our son's problems, could we find peace with that knowledge?

What will be the application of these new testing techniques?  What will expecting parents do with the information revealed by such a test?  Would I want to know that my child is destined to develop cancer or a variety of other illnesses, disorders, and conditions?  I'm not sure.  Do you then live your life in anticipation of the time when these events unfold?  Does it make you more diligent or more reckless?  As I watched the news report on this new technology, the story of the Tower of Babel came to mind.  The people of Babel were so arrogant and pleased with their accomplishments.  Are we reaching the point with technology where we are "playing God"?  Again, I'm not sure. 

Our eleven year old was watching the news with me when they covered the story that I am referencing.  His reaction was immediate and surprisingly strong.  Upon hearing the story, he said, "Why do they need to know that stuff?  What difference does it make?  Would some parents end the pregnancy if they thought their baby had something wrong with it?"  I replied that yes, some parents may choose the terminate a pregnancy if something were wrong with the baby. We discussed the fact that many parents may have chosen to not have a child like his brother if they had know what life would be like with him.  Vehemently, he declared, "That is wrong!  Nobody loves life like my brother!  Nobody loves people like my brother!  Nobody loves ME like my brother!  I think he even loves me more than you Mom and you love me more than anyone.  He's happy all the time.  The littlest things make him happy."  And I thought, "Well said son.  Well said indeed."

New technology and testing techniques are wonderful.  Scientific advancements are awe inspiring.  It's the application and the long term consequences of technology that can be frightening.  I hope and pray that as these new tests are developed, they are used in ways that will benefit society.  Additionally, while identifying problems early may be helpful to some, I also know through personal experience that weathering life's trials has helped me to grow in ways I could not have anticipated.  Thank you Lord for your trials.

* My favorite part of Laura Story's "Blessings":

"Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy?
And what if trials of this life
The rains, the storms, the hardest nights
Are Your mercies in disguise?"

** http://www.msnbc.msn.com/id/47710985/ns/health-health_care/t/new-testing-could-help-spot-genetic-disorders-fetus/

Making Decisions

I've often joked with family over the last month or two that our son finished school in April.  Here it is June and the rest of the world just forgot to read the memo.  He has a unique developmental pattern that involves a series of developmental bursts that are usually followed by a predictable pattern of regressive behaviors including drooling, stuttering, verbal blocking, increased clumsiness, and behavioral frustration and/or tantruming.  It is these regression periods that often leave us in a bit of a quandary.  Where do we go from here?  How do we help him through this stage and guide him into the next important stage of development?

During these developmental "bursts", it is as if someone has thrown on a light switch.  Literally over night, it seems as if he is gaining new skills and new behaviors.  We are often blown away by what he can now accomplish that he couldn't previously.  It is during these bursts that we experience "familial highs" of a sort.  Times are better.  Life is easier.  He is more content and easier to work with.  These bursts involve learning and displaying many new skills that were previously unattainable for him.  We are so hopeful and motivated for him to move forward during these time periods.  We see the possibility of what could be for him and what his future may hold.

Unfortunately, these lovely bursts are almost always followed by a regression period.  These periods are generally first noticed when the drooling begins.  He may be six but during a regression period, he will begin "mouthing" everything including his clothing, toys, pencils, etc.  It is not unusual for him to come home from school with the top section of his shirt wet from chewing on it or from wiping his mouth on it.  NOT a pleasant or hygienic situation.  It is also during these lag times that our happy, pleasant child becomes prone to irrational tantrums and outbursts.  The slightest redirection or criticism can result in crying, screaming, running around the house like a crazy child.  You can not rationalize, reason, or process with him during these periods.  His frustration level is always set on "simmer".   These are the times when we question what his future may hold.  We question what we can and should be doing for him.

During these periods of transition, we are often left asking ourselves which direction to go and are faced with important decisions that need to be made.  Do we continue with the current therapies?  Are the current therapies sufficient or do we need to pursue different avenues?  Are the current therapies necessary?  Should we do more?  Or less?  It's the questions that can drive you crazy.  You're never sure what the answers are or if you are going in the right direction.  Our current round of questions surround the issue of his speech/language delays.  His individualized education program (IEP) at school is for a speech/language disorder.  Currently, one of his main issues is his stuttering and blocking.  At school, he is receiving speech therapy weekly.  Yet, out of school, he hasn't received speech therapy since his old  speech therapist left for a new job.  Should we have him retested and start him with a new therapist or is this part of his current regression phase?  Should a therapist be addressing his low facial motor tone or is this also part of his current regression phase?  Are we hesitant to add more out of fear of overwhelming him?  Or are we hesitant out of fear of overwhelming ourselves?  What is the priority?  What is the right decision?

When it comes to parenting, I don't know that there are right or wrong answers.  I think the fact that we ask ourselves the questions in the first place, shows that our hearts are in the right places.  Unfortunately, the decisions we make have long term ramifications for ourselves and our children.  We can only pray that the decisions we make are made for the right decisions and turn out for the best. 

What a Difference a Year Can Make!

Listening to him read aloud, sounding out the words, I am close to bursting with pride.  Could this be the same little man who couldn't write his own name; identify any of the letters of the alphabet; or identify items in one-to-one correspondence a mere nine months ago?  How the time has flown!  How he has grown!

As I listen to him read aloud, stuttering, grimacing, mouth moving, no sound able to come out as he "blocks", I am reminded of how very far we have to go.  Will he ever outgrow his expressive language disorder?  Will his speech flow smoothly and without effort or will he struggle to get out simple phrases and sentences as everything jams up inside?  I'm sure he'll outgrow his developmental motor coordination disorder.  Won't he?  After all, at nine months he couldn't sit up by himself, crawl, or even use a basic pincher grasp.  Now he climbs up in his tree house, kicks a soccer ball around the yard, and zips his own coat.  So what if he can't do those tasks as easily as his classmates.  He'll get there eventually.  Won't he?

As we near the end of the school year, I look back at the worries we had for him starting school.  Some of those worries came to fruition.  Some did not.  We worried about his safety on the playground.  On the first day of school, he fell and scraped his face from the tip of his nose to the top of his forehead.  We worried that he wouldn't fit in or that the other kids would tease him.  Instead, he's invited to birthday parties where his buddies skate over to check on him or show him a new trick or just say hi, even as I have to hold him upright on his roller skates because he can't stand in them without assistance.  We worried that he would miss the bus or get on the wrong bus or forget to get off the bus.  So far, so good.  We worried that entering the school system would change him, that special unique little guy that everyone loves.  So far, it hasn't. 

His reading skills are amazing.  Math skills, so so.  His handwriting is atrocious.  But better than we expected.  He is constantly writing signs and letters, sounding out words, drawing pictures.  His interest in school and patience for the routine has blown us away.  They tell us he has trouble focusing.  We are in awe of how well he has done.  They have no idea how his affection for the staff and other kids has translated into genuine effort. 

Our little man with his many health and learning issues has almost survived his first year of school in spite of many obstacles and complications.  He successfully transitioned from a family day care of six kids to a kindergarten classroom of thirteen or more.  Prior to the start of and throughout the school year, he has transitioned through a series of stints with grandparents as I have undergone my different hospital stays, tests, surgeries, and procedures.  In addition to his regular class work, he attends occupational therapy, physical therapy, and speech therapy at school.  Once a week, he leaves school early to attend occupational therapy at the Janet Weis Children's Hospital.  To top it all off, he has survived the transition from his regular kindergarten teacher to a full time substitute after his teacher went on maternity leave.  Ironic isn't it, that the year our guy starts kindergarten is the district's first year of full day kindergarten and the entire kindergarten staff are expecting within a month of one another.  Through it all, he continues to smile and laugh and make us want to pull out our hair. 

We worry about want the future may hold for him.  Is that any different than other parents?  Don't we all worry about our children and their future happiness and success?  If this year is any indication of what he can weather, I think we're going to be just fine.  Tired... but fine.

Keeping the Faith

What gets you through when you feel as if you can't do it another day?  How do you cope when your frustration level is maxed out?  You've tried to stay positive, upbeat and encouraging but you just want to weep or scream or hit something.  I don't know if all parents can relate to that bottomed out feeling of "I'm done.  I don't have it in me anymore."  I hope that they can.  I hope that I'm not the only one. 

It's funny that my children are my biggest source of joy and inspiration.  They lift me up when I'm tired, or frustrated, or run down from a week of work and stress.  We have two really good boys that we work hard as a family to keep that way. Yet ironically, they are often my greatest source of aggrevation and heartache.  Those are the days when I look at my husband and declare, "I'm not cut out for this motherhood stuff."  Am I the only one who feels this way? 

I've learned to utilize a variety of "coping skills" to help me through these moments.  Exercise, writing, reading, and music all help me to find my center when things feel like they may be spinning off course.  The exercise has helped my body and mind.  A good workout lifts my energy and spirits even when I have to talk myself into doing it.  Reading helps to take me away for a short time or offers inspiration and insight when I don't have the answers.  Music, especially groups like Casting Crowns and Point of Grace, helps me focus on what's really important and what my priorities really need to be.  Finally, writing helps me put into words what spins and swirls through my mind.  The act of putting it into words helps to arrange it, organize it, and put it in order for my mind to process.

Kids fighting in the backseat; working on homework with a tired and frustrated child; running to soccer and school events; and an obsessive-compulsive child who stutters and drools but refuses to let you finish a sentence for him.  Going and going without enough sleep or time to renew your body and spirit.  These are the little things that build up and make you tired deep down inside.  When you add in some of life's bigger trials, it challenges the core of who you are. 

Fortunately, we were given free will.  Because of that, I choose time again to keep going, to try to stay positive, and to love my children and our family.  It would be easier to turn and walk away but then I wouldn't have moments singing songs together around the campfire.  I wouldn't be able to cuddle in bed reading bedtime stories.  It would mean living without fresh picked dandelions and a little face saying, "For you because I love you Momma".  I wouldn't hear belly laughs as they roll around on the floor tickling one another.  Okay.  I will try to stay positive; to keep the faith; to be patient and model the type of person I want them to become.  They are worth it everytime.  Our family is worth it.  Thank you God for the patience and the fortitude to keep trying to be the mom that my boys need me to be.

What If I Had Known?

On the way to work today, I heard a news story about a couple in Oregon who sued and won a wrongful birth lawsuit.  Yes.  "A wrongful birth lawsuit."  They claimed that the doctor failed to correctly identify that their child was going to be born with Downs Syndrome.  Had they known, they say they would have terminated the pregnancy.  I am not writing this in judgment of their decisions or their situation.  They must live with the choices that they make in their lives.  Instead, I am writing from the perspective of what would I have done if I had known in advance about my youngest son's issues.  If I had known about all of the money we would spend; all the sleepless nights we would have; all the appointments and therapists who would visit; and all the stress and strain we would have on our relationships, would I have made the choice to keep him?

After a long, often stressful day working with adjudicated females, there are days I don't feel equipped to be his mother.  I don't feel up to being encouraging about practicing handwriting with a child who has expressive fine motor delays.  Practicing speech patterns with a child with disfluencies, speech blocks, and repetitive patterns is sometimes the last thing I want to do after a day of trying to motivate students who want nothing to do with learning or education.  Yet, it almost never fails that on these days, he ends up encouraging and motivating me.  As he sits at the table, with his characteristic death grip on that pencil, practicing those letters and words, he looks up at me with that smile that melts hearts and I can't help but feel ashamed of myself.  He has to work so hard to do things that come so easily to the rest of us, things we absolutely take for granted but he never gives up.  How dare I feel tired and overwhelmed when things come so easily for me?  This little man of mine teaches me a lot about strength and perseverance and most of all, humility. 

Patience.  Did I really know what that was before my youngest child was born?  I'm not sure I did.  Before he was born, I never faced the minutes as they crawled into hours, as a child struggled to breathe and I waited to be able to administer the treatment and medicine that may or may not get him relief.  In the days before he was born, I had never experienced the frustration and fear that comes with not knowing, not having a diagnosis or clear explanation why your child was delayed.  I had never had to wait for answers to questions that the experts didn't have answers to.  Before my son was born, I never had an argument with a child with no understanding of the concept of time.  Additionally, before my son was born, I had never attempted to complete homework with a child who writes in complete mirror image whenever he is tired.  Erasing the same sentence over and over, so that he can eventually write it down correctly.  No.  I don't think I knew the real meaning of patience.

Struggles and trials are part of our life with our son but there are so many snapshots of joy that come to mind when I think of him.  I love cuddling on the couch with him, reading stories or watching "his shows".  The image of him wiggling his little behind at us and singing "I'm sexy and I know it."  Yeah.  Try and keep a straight face with that one.  I dare you.  Picturing him as he walked backwards down our long driveway, painfully slowly, but step by step, here he came, because his brother dared him to.  When he reached the porch, he spun around with a smile bigger than the sun and ran in the door laughing.  Seeing him slurping wonton out of a bowl like it's leftover milk from breakfast cereal, then giggling and telling us how much he loved the egg soup.  Remembering him laying on the ground, while trying to fly a kite, because that's what his brother was doing, so that's what he wanted to do.  My favorite image is him falling asleep in the back of the truck as we drove home from hiking together.  He had managed to wiggle himself into the corner and looked so very, very sweet as he snored away like a little old man. 

Knowing what I know now, would I have made the choice to keep him?  Resoundingly, I say yes!  Life without my youngest would be like living life with the dimmer switch on.  The colors would be less vibrant.  The smells would be less sweet.  Without him, the laughter would be less spontaneous, less heartfelt.  Our appreciation of the little moments of joy would be less pronounced.  Because of him, I am tired and stressed and some days completely overwhelmed.  But because of him, I am also a better person, who has been touched by grace and given the opportunity to grow in ways I never could have imagined possible.  Thank you God for the chance to be his mother.  Thank you for the lessons that he teaches me on a daily basis.  I can't imagine a single day without him in my life.

A Father's Perspective

In the past, I have discussed the impact of having a child with special needs on the family as a whole; on myself, as a mother; and on my oldest son, as an older sibling.  Today, I will attempt to relate the experience of parenting a child with special needs from my husband's perspective.  Statistics are unclear regarding fathers and children with special needs.  What statistics are available tend to paint a somewhat bleak picture.  They show that the divorce rates of parents of children with special needs are higher than the national average and that those households are usually headed by mothers raising their children alone.  That is why a father's perspective is very important indeed.

While discussing our son and his issues, the question arose, "What is the most difficult thing about being a father to our son?"  After a pause, my husband replied, "It depends on whether you mean in the past or present tense."  In the past, it would have been coming to terms with how he parented our boys and his priorities in regard to our family.  Our oldest son was a very easy child to raise.  Because of that, my husband admits that it was very easy for him to go off and do what he wanted without having to think about the impact it would have on the family.  He could do the things that interested him without worrying that it was keeping me from doing what I wanted to do because our son would cooperate with pretty much anything. 

Such is not the case with our youngest son.  Our world now revolves around who is supervising our youngest child.  If he is around, it requires a dedicated level of attention and supervision because you cannot predict what he is getting into or if he is a being a safety risk to himself.  Even at six years of age, it requires a level of supervision comparable to that of a three or four year old.  My husband commented that "You just can't trust him."  Our youngest son is highly impulsive. He lacks an awareness of danger and an awareness of the consequences of his behavior.  If you tell him no or stop, he does not understand that by not listening, he could get hurt.  My husband started taking our oldest son with him to the fire hall, to the wood shop, and to the woods to go hunting at a very young age.  He is very hesitant to do these same things with our youngest son.  "You can't turn your back on him for a second or trust that he is staying out of trouble" like you could with our oldest son, who would ride his tricycle around the shop for hours while my husband worked on projects.  Our youngest son thinks nothing of stealing tools and climbing under or on the tractor to "work on it".  Images of him turning on a belt sander or table saw keep my husband from trusting him to go along to work on projects.  In addition, once our youngest fixates on something he wants to do, no amount of distraction or redirection will sway him from avoiding that activity, even if that activity could be dangerous. 

Because of these supervision issues with our youngest, my husband has had to learn to prioritize.  He has had to learn to tell others outside of the family no.  It also means that sometimes he needs to put aside what he wants to do for the good of the family.  He may need to come home to get the boys off the bus instead of going out hunting right after work.  Not much fun, that's for sure, but I can tell you that the choices he is making are paying off big time.  The boys recognize that he is around more.  They are less resistant to his redirection and feedback and have stopped coming to me to second guess what he is telling them.  His time at home is seen as less of a distraction from our routine and is now seen as more of a blessing.  It is now normal to hear "Daddy, come cuddle with me." or "Daddy, come read me this book."  It is common these days to see them cuddled up watching a hunting program or an episode of The Three Stooges. 

In terms of parenting in the present, my husband admits that having our youngest son has made him have to take a closer look at how he parented.  It was easy to "bully" our oldest son into doing what he needed to do.  If you raised your voice, our oldest son would stop what he was doing and cooperate.  This was how my husband used to parent.  This DEFINITELY doesn't work with our youngest child.  Our youngest cannot be bullied.  He cannot be intimidated.  Instead, he sees these behaviors as a direct challenge.  His issues and his personality have caused my husband to have to closely examine how he interacts with our children.  As he puts it, "I have had to look at my level of patience when it comes to our boys."  Instead of demanding or ordering, he has learned to ask.  Instead of coming off with anger, he has learned how to discuss, reason, and explain.  He admits that having to learn to be patient with them isn't a bad thing.  Our oldest son may have let us get away with lazy parenting techniques.  Not our youngest.  Nope.  He will make us work twice as hard, but in the end, the results are more positive for everyone.  We have both learned to be better parents because of him.

Our youngest child has also taught my husband that "not all battles need fought today."  He has had to learn to choose wisely when it comes to addressing issues with him.  Is this an issue that can be won today, or is it an issue that needs to wait to be waged at a later date?  Will our son's skills allow him to grasp the significance of what he is trying to get across to him?  This is a skill that has value when interacting with people across all walks of life. 

When asked what was the best part of being a Dad to our youngest son, my husband's face lit up with a smile and he replied without delay, "He's such a cool kid.  They both are.  But he's just an awesome kid.  He's a crazy little nut."  It's fun to watch him become who he's going to become.  "The chance to help to raise a special young child like this is priceless."  To take pride in who he is and who he is becoming.  To know that we had a part in that.  That is what makes it worth all the hard work, worry, and sacrifice. And isn't it fun to see, that while we are teaching and helping him to grow, he's doing the same for us as well.

Parenting During Times of Trial

Most parents can probably identify with the experience of trying to be the best parent that they can be while living through personally difficult times.  We all face them - death of a loved one; illness; accidents; financial worries; or relationship problems.  Life doesn't wait for the ideal moment to throw these challenges at us.  Rarely do we have the luxury of facing just one obstacle at a time.  Life's problems tend to come at us in clusters instead of single, easily handled challenges.  At least that has been my experience. 

The last two years of my life seems to have been one shocking event after another.  Please understand that this is not a pity party or a plea for sympathy.  It is merely a statement of fact.  As I have discussed previously, my husband and I have worked diligently to repair and strengthen a marriage that in the past was one of the absolute best but had begun to weaken due to neglect as we cared for our youngest son with his health and learning issues.  It is a challenge that may have been overwhelming in and of itself.  But it is just one of many challenges that we have had to learn to face together.  Some of our biggest challenges have taken place in the last nine months alone.  Following months of gallbladder attacks that they mistakenly took for an ulcer, I was admitted to the hospital for emergency gallbladder surgery and pancreatitis.  It was severe enough that my small intestine had begun to shut down.  The day I was discharged from the hospital, as I began to come out of the anesthesia, I realized that I had no hearing in my left ear.  At some point during my hospitalization, I had gone deaf.  In addition, I was having trouble keeping my balance and focusing my eyes together.  I lost the ability to read for almost three weeks.  What followed was weeks of specialist appointments and tests.  The only treatment option available to try to help me regain my hearing was to have liquid prednisone injected through my ear drum and into my inner ear. This was done three times on a weekly basis. To say it was uncomfortable, is a bit of an understatement. 

As the summer began to draw to a close, I was faced with the need to adjust to the reality of teaching in a corrections setting with only one functional ear (the loss is profound and permanent).  At the same time, our family was bracing for the reality of my youngest son, with all of his learning/developmental issues, starting school.  How would we balance it all?  How would we face his issues as well as our own?  The idea was daunting and overwhelming. 

We did okay.  There was a definite learning curve with both issues.  Just as we seemed to be finding our stride, I started losing fields of vision.  When I say I lost fields of vision, I mean I would only see the top half of a view.  Everything below mid line would be black or black and sparkly.  Or I could see out of one eye, but not both.  Sometimes things just seemed out of balance or foggy.  The vision loss usually lasted an hour or two, then would return to normal.  This new development earned me a series of new tests and specialist appointments.  Good times.  Oh yeah, good times.  It was finally determined by a neurologist and optomologist that I had ocular migraines.  No.  They didn't know why for sure.  They decided to put me on a medicine called Neurotin to help rectify this problem.  It seemed to help. 

During this time, we were trying to get my youngest son's Individualized Education Plan (IEP) in place.  This followed months of testing and waiting.  The school finally had everything in place to start services for him at school.  I was trying to stay on top of school documents, school meetings, and everything else he needed me to be doing to make him successful, while I was distracted by my own issues.  I often felt I was letting him down.

Around this same time period, my audiologist and ENT specialist talked to me about a surgical procedure that could be used to help me regain my hearing to some degree.  They called it the BAHA implant.  As a trial, they let me wear a headband devise with a small receiver attached on the side of my hearing loss.  For the first time since June, I could hear.  This was a very emotional moment and definitely helped me make the decision to have the surgery.  It would involve hollowing out a bowl of tissue behind my deaf ear and implanting a titanium rod (abutment) into my skull.  After three months of healing, they would attach a small receiver to the abutment.  Sound would travel from the receiver, through my skull, to my good ear, providing the ability to hear again.  Initially, my health insurance denied me the surgery, but my doctor spoke on my behalf and they reevaluated my case and approved it.  The initial surgery went well.  The hearing cap fell off the day after the surgery and we had to go back in to have it put back in place but everything else seemed to be going well.  It was an interesting experience.  Once the healing cap, which looked like a men's athletic cup, came off permanently, I had to rely on my husband for even basic care of the surgical site.  He had to wash my hair for me as I tried to keep the incision site dry.  He cleaned and bandaged my head for me.  During this time, he did homework and kiddo duty.  I couldn't have done it physically, mentally, or emotionally without him.  He has been an amazing rock through all of it. 

Then a week before Christmas, while at work, in the middle of teaching, the implant fell out.  I mean literally fell out of my head.  It was very, very disheartening.  My ENT specialist said it only happens in three percent of all surgical cases.  I hadn't done anything wrong.  The implant had just failed to adhere, or grow fast to the bone in my skull.  I would need to wait three weeks for the original site to heal.  After it was found to be healed, the surgeon would re-implant another titanium abutment in an adjacent location.  That meant I was starting all over.  It would be three MORE months after this new surgery before I would be able to get my receiver and gain my hearing back.  This was a very serious blow to my spirits.  Fortunately, we got through the holiday season unscathed and the new implant was successfully implanted in mid-January.  I was scheduled to get my receiver in mid-April, but the specialist called and rescheduled the appointment to mid-May.  Disappointing but at least things are going as anticipated this time.

I am currently writing this while signed off from work recovering from pneumonia.  It has indeed been a year of challenges.  Please recognize that I know that there are many, many people who face much more serious and overwhelming problems than I have described.  A wonderful woman that I graduated school with is facing cancer for like the third or fourth time.  That is much more traumatic than what I have gone through.  The point I am trying to make is that life can be challenging, even traumatic.  So how do you get through it and still manage to raise happy successful children?  How do you meet their needs while trying to meet your own?  These are the questions I have had to address, particularly over the last year.  I am still learning to answer them.

For me, it has taken recognizing that I'm going to screw up.  There are no perfect parents, just those who are trying their darnedest to get it right.  I have had to learn to ask for help from friends and family.  This isn't easy for me.  I have also had to learn to lean on my husband through the tough times.  Again, not an easy thing for an independent, Type A individual.  Most importantly, I have learned to lean on my God and Savior.  As problem after problem kept coming, I began to question, "Why?"  I live by the motto of help others; be kind and polite; do the right thing always.  So why did life keep knocking me down?  I have come to the conclusion that God is preparing me.  For what?  I'm not sure.  His time, not mine. 

In many ways, the challenges of the last year have made the beautiful moments in life even more clear. There have been times, while recovering from one of my four surgeries, that I would see something happening in my home and think "Freeze. Right there. Don't forget that moment. It is so special and dear and amazing. Don't let it slip by." These moments usually involve my children interacting with each other in a loving or funny way. The image of my two boys curled up on the couch, totally engrossed in The Three Stooges, laughing out loud, eyes sparkling with joy and humor. Or they involve my husband caring for my children in his own loving and devoted way. I can see him leaning over the back of my son's chair, leaned over talking to him, as they work on homework. Not momentous moments, but the beauty of those scenes, stays with me.   Maybe if I hadn't gone through the struggles of the last couple years, I wouldn't appreciate the little moments of beauty in my life.  I vow to keep my eyes and heart open and wait to see where God leads me.

Being the older brother

Having a child with special needs, regardless of the severity or diagnosis, has an impact on the entire family.  It affects the individual, the parents, siblings, and extended family.  One of the individuals directly impacted by our youngest son's developmental and health issues is our oldest son.  For the first five years of his life, he was an only child; the only grandchild on my side of the family; the only male grandchild and only local grandchild on my husband's side of the family.  He was showered with attention and affection by family, fire company members, and our church family.  All of that changed with the birth of our youngest child.

I try to image what it has to be like to go from being the center of all that attention to being the older brother of a child with special needs.  Many children have trouble adjusting to a new baby.  It is common for older siblings to experience a regression in behavior and learned skills after the birth of a new brother or sister. Babies take away time, attention, and energy that were once devoted solely to the older sibling.  The required adjustments can be even more significant when the new baby has health and developmental issues.  In our case, we now had three therapists coming into the home weekly; specialist appointments; hours of breathing treatments and hours of cuddling a sick baby.  I have always worried that our oldest resented those lost hours that were now devoted to his brother.  In a recent conversation, I discovered that my oldest son has adapted to our life quite well.

While talking with my oldest son one evening, we started discussing what it was like to be the older brother.  He told me that most people don't realize his brother has problems when they first meet him but if they spend time with him, everyone seems to notice.  "It's most obvious when he has to do something, especially write or use his hands."  I asked him if it was embarrassing having people realize his brother has problems doing things.  His response was to say "No.  Most people seem to like him anyway so it's not a problem."  When I asked him what the hardest part of the having him for a brother was, he told me the tantrums in public were really embarrassing.  "People see him and think he's too old to being throwing fits like that.  That's embarrassing."  Finally, I asked him if it was hard sharing us with his brother or if he felt his brother got too much of our time and attention.  There was a definite pause before he replied and I thought "Uh. Oh."  Instead, he response made me really, really proud of him.  After pausing to think about it, my eleven year-old's reply was "No.  If he didn't have the problems he has, it might bother me.  But he needs the time and attention you give him.  If you didn't give him that time and attention, he might not be as good as he is."  He went on to explain that he sometimes wished his brother could do things like other kids his age, like play soccer or keep up with him in the woods.  It would be fun to have him do those things with him.  Instead, he usually tries to play things that he knows his brother can do successfully.

Being the older brother means being asked to help out. That can be frustrating. Some days he doesn't feel like helping get his brother breakfast, or helping him clean up the basement, or any of the other daily routine items that we may ask him to do. We expect him to help get his brother on and off the bus each day. Sometimes, when it's a "bad day", he responds better to his brother than to us. On those days, he has learned to help coach his brother along with whatever needs to be done. There are mornings I don't know if I could get his brother off to school without his help. Learning responsibility at a young age hasn't seemed to hurt him. He was the first student of the month for his grade this year. His grades are consistently top of his class. Can it still be annoying to have to help out with a brother like his? Sure. Is it something he resents? According to him, no. 

They love one another.  Matter of fact, my youngest definitely hero worships his older brother.  But they are also normal brothers who argue and pick at one another.  When they are bored and stir crazy, they could drive a person insane with their fighting.  Does my oldest get jealous?  He admits that he does at times.  "Everyone loves him.  It's hard sometimes." 

We have made an effort over the years to make time for our oldest that doesn't involve his brother.  He and my husband go hunting together.  At eleven, he has already shot a buck, a doe, a groundhog, a turkey, and numerous squirrels.  If my youngest, hero worships his older brother, my oldest son definitely hero worships his father.  Recently, he has been allowed to start attending training and work sessions at the fire hall with his Dad.  He can't wait to become a junior fire fighter in three years.  My oldest and I share a love of reading and recently finished The Hunger Games trilogy.  We have set a date to go see the movie when it comes out this spring.  This is something we have done since he was little.  We pick a movie and make a date of it, just the two of us.  It seems to mean a lot to him.  Our solo time with him seems to smooth out the frustration of having to share time with his brother and his issues.

I always hoped that my boys would have a close relationship growing up and a closer one as adults.  There are days they seem to be the best of friends and days they seem to despise one another.  I do know that having a brother like his, has changed my oldest son in immeasurable ways.  We are doing our best to ensure that those ways are mostly positive.  Time and God's grace will see if we succeed.  So far, he is a pretty amazing kid and I'm very grateful for the chance to be his Mom. 

Loss of a dream through God's grace

I can't believe he's six.  It seems to have been just the blink of an eye.  In some ways, it has also been the longest, hardest, most trying six years of my life.  That's how life with my youngest child is, an oxymoron.  Great joy.  Overwhelming frustration.  Deep love.  Bitter disappointment.  Glimpses of God's plan and grace. 

After our youngest child was born, it soon became apparent that life with him was not going to proceed as I had envisioned it.  While he was the sweetest natured baby I ever could have asked for, he was sick.  A lot.  As he grew and developed, that quiet, gentle disposition continued, but it became apparent that he wasn't reaching appropriate milestones.  Through those early years of tests and therapy and medical treatment, I held onto the hope that once we did this, or once we did that, he would be "normal".  It wasn't until he was almost four that I realized that "normal" wasn't going to happen.  At least not in the way that I had imagined.  I had a picture in my mind of how I thought his life should be.  In a way, it was like my dreams for him had to die in order for me to see and accept him for who and how he was.  I had to give up my expectations and learn to love him for who he was.  Let me tell you who my son is at the age of six. 

He is  a teaser.  He loves for someone to tease and harass him in a loving way because he loves to dish it right back.  My grandmother is a woman with sharp wits and a sharper tongue. I love to watch the two of them together.  The joy they both get out of harassing each other is priceless.  He and his father are the same way.  My oldest son and I just sit back and watch the two of them go through a verbal dance of sorts as they tease one another.

There is nothing my son likes more than a good laugh.   When he laughs, it comes from his toes in a full open mouthed belly laugh.  It's the kind of laugh that babies have but often seem to lose as they grow.  If he is laughing, I guarantee those around him are too.  It's contagious.  His laughter is never at someone else's expense.  It is from a place of pure joy and happiness. 

He is bull headed and strong willed. I often call him "Rain Man" because once he gets an idea in his head, he doesn't let it go. No amount of pleading, threatening, reasoning, or bullying will get him to change his mind. It only delays the inevitable. This is an annoying characteristic in a child but may serve him well as an adult. He will not be swayed from his convictions.

Our son finds joy in the simplest of things.  For his birthday this year, all he asked was to "go to Hooplas with my family" and for a "special cake".  On the day of his birthday, we decided we were going to play games and eat at Hooplas as he had requested.  Because of that, we chose to wait to give him his presents until the day of his party with the rest of the family.  Not once, did he question where his presents were or if he was even getting presents.  He was totally satisfied with the idea of going out for the evening with his family. 

He is the hyper, distracted, impulsive boy with gross motor, fine motor, and speech delays.  During the lag time stage of his developmental cycle, he stutters and chews on everything he gets his hands on, including his clothing.  He daydreams and seems to be somewhere else when you want him to be focused on the task at hand.  Our son is the kid in class who seems to take forever to master a skill and you wonder if he's ever going to get it.   He's the guy that the teacher loves but he drives her absolutely crazy at times.  He leaves her wondering, "What am I going to do with this kid?"  Join the club.  We often wonder the same thing.

Finally, he is a people person.  He absolutely loves people and people love him.  There are almost too many examples of this to share.  On the afternoon of his birthday, as he got on the bus, the middle school and high school kids starting singing Happy Birthday to him.  He's only in kindergarten but the older kids take turns entertaining him, in part, because he is so much fun to be around.  I often say that he takes a party wherever he goes.  When we went to my oldest son's basketball game this weekend, it seemed like every other person going into or coming out of the gymnasium said hi to my youngest son.  He seemed to know everyone.  Once inside the gym and seated to watch the game, a high school girl turned around and said hi to my son.  Apparently, it was "last week's girlfriend" from the bus.  Before I knew it, he had slid down the bleachers and was cuddled up next to this girl drawing on her I-Pad with her.  They entertained each other for the whole game.

Our son will probably never become what I had envisioned for him.  I'm so glad, because although it hurt to lose that dream, the reality of who he is, and who he is becoming is so much greater than I could have imagined.  And maybe, just maybe, through him, I and those who are fortunate enough to have him in their lives may get to become more than we imagined for ourselves. 

Hyper... You think?!?

It's that time in the school year again... report card time.  A time of praise and criticism.  Endings and beginnings.  As usual, I am left proud, yet frustrated.   For them, it is a quarterly event, this period of assessment and reflection. For us, it is a daily or weekly ongoing trudging progression and process.  It's time to take it in and reflect, then shake it off, buckle down, and do what we do... attempt to make our sons successful.

Our eleven year old is very bright, if not downright gifted.  He is also impulsive and hyper.  At an early age though, we learned that, like a hyper Labrador retriever puppy, frequent physical activity takes the excess energy out of him and makes him more manageable.  We closely monitor his diet and behavior, all of which has resulted in a pretty cool kid.  He is always on the distinguished honor roll and earns nothing but praise from his teachers.  This is not by chance.  It is hard work on his part, and to a lesser extent these days, ours.  He makes us extremely proud to be his parents... even if his mouth runs like a duck's behind at times. 

Even if his gifts are more hidden, our youngest son is also bright.  Like his older brother, he is also impulsive and hyper, probably more so even.  Unfortunately, due to his gross motor delays, we have a harder time using physical activity as a tool to drain his excess energy.  His diet and behavior are closely monitored, as well.  Unlike his older brother, his comments from school are not as glowing.  They are nice but not as full of praise... we are still extremely proud to be his parents.

Our youngest son is a week shy of six years old.  Since he was two, we have been told by teachers and therapists that he is hyper and impulsive.  No!  Really?  I live with him 24/7 but I was not aware of this!  I'm shocked!  His report card comments report that "he needs repetition of all concepts in order to retain the information".  Well, yes, that is usually the case.  I've been teaching him to tie his shoes for two and a half years now.  It took me five years to potty train him.  He still doesn't sit still for a whole meal, heck, for the first ten minutes of a meal.  Tell me again that he needs repetition.

His report card reports that "His attention difficulties are affecting his academic growth."  Probably.  It would be a pretty easy solution to say "Hey.  He's hyper.  Let's put him on meds."  The reality is that will be a last resort.  I will have to have worn myself to the bone and the teaching staff to a frazzle before I will even consider that option.  The reason?  We don't know why he is the way he is.  We do know that his brain functions differently than ours.  He's taking it all in, have no doubt.  He's not missing a trick.  But he can't seem to make his body comply.  There is something there in his brain chemistry that is different or disconnected expressively.  What would meds do to that brain?  His neuro-developmentalist even questions what they would do to him.  She was very straight forward when she said "I would be very disappointed if you resorted to meds as an easy out at this time."  I agree whole-heartedly.  Our life with him is far from easy.  But we don't know that the alternative would be better.  Is it worth risking at six years old, while only in kindergarten, before his brain is even close to fully developed?  I don't think so.

I teach thirty incarcerated female offenders at an alternative school in a group home.  Over fifty percent of our population has an Individualized Education Plan (IEP).  Another twenty-five percent probably should have one but their families didn't know enough to push for one at a young age.  The remaining percentage are full of gifted girls who are bored out of their minds because no one has adequately challenged them over the years.  This is no exaggeration.  It is my reality at work.  I do not have an aide.  I do have an itinerant Title I teacher who comes in twice a week to work with the worst cases.  My students' reading levels range from first grade to college level for thirteen to eighteen year olds.  In addition to some serious learning challenges, they also face some pretty significant life issues.  That is my daily challenge.  To get them to care.  To get them to learn.  To get them to grow as young women...  I tell you this to make the point that I know what it takes to teach kids who are challenging.  I do it daily. 

Do you really want to tell me that my six year old's academic growth is affected by his attention difficulties?  He is in a kindergarten class with twelve other students.  He has access to a classroom aide and a Title I teacher.  He is receiving speech therapy, occupational therapy, and physical therapy at school.  In addition, he is receiving occupational therapy at the local children's hospital.  He is being followed by a neuro-developmentalist.  He has two parents who are not only committed to making him successful but are also actively involved in working with him and challenging him to meet his full potential.  Homework takes at least an hour every night.  We tease; we challenge; we play games; we encourage; heck, at times we feel like ripping our hair out; but we get it done.  Tell me what more you need us to do.  We know you are dedicated.  We appreciate your efforts more than you will ever know.  Your affection for our child and your concern for his welfare are clear, of that we have no doubt.  But please do not imply that our six year old needs meds or enough is not being done to meet his needs.  If you can tell us what more needs to be done, we will do it.  But do not ask us to medicate him.  His brain is not yet developed enough for us to take that chance.  You have him for a year.  Your school has him for the next twelve. We'll deal with the consequences of an easy solution for the rest of our lives. 

I think I am expressing the frustration of many parents who are facing an uncertain future with their children.  What is the right decision?  Am I doing what is right and fair for my child or am I doing what is easiest for me?  I don't think there is a right decision.  I can't possibly sit in judgement of parents who decide that medication is the answer for their child.  I'm not living their experience with their child.  May my child need medication in the future to help him manage his impulsivity and hyperactivity?  Sure.  I'm not deluding myself that that option may not be in our future.  I just know it isn't the answer at this time.  He is too young.  There are too many options still available to us.  He needs time to grow and mature.  After all, he may be almost six, but developementally... he is only four. 

Tonight, through this forum, I vent my fear and frustration.  Tomorrow... I continue to do the job of raising my child to the best of my abilities.  All I know is that I love him and want the best for him.  Isn't that what every parent wants?

Laughter Is the Best Medicine

It has been an especially trying week, so instead of focusing on what is not right in my world, I have been trying to invest energy in remembering what is well and good and healthy. This week's focus is on that... the moments when my boys make me laugh and remember that being a parent is the hardest, yet most rewarding thing that I will ever do with my life.

When I came home from work, my youngest son was diligently working on writing something at the kitchen table.  "What are you doing Buddy?", I asked.   "Are you working on homework already?"  He pauses and replies, "No Momma.  I'm writing my girlfriend list."  Silence.  "Your what?!?", I question, thinking I may have heard him wrong.  "My girlfriend list" he replies, and continues working with intense focus.  Totally straight faced, my oldest chimes in, "Don't worry Mom.  It keeps changing every day."   (WHAT?!?!)  That's my boys.

At 4:30 am, I woke to a little face a mere inch from mine.  As I strangle a scream and struggle to come to consciousness, I realize that it is my youngest son.  "Wha.  Wha.  Wha.", I mumble incoherently.  "I had a bad dream.", he tells me.  My consoling, mother-of-the-year response was "Go to the potty and go back to bed."   Surprisingly, he does.  An hour and a half later, when I get him up for school, he informs me "I'm not making bad robots anymore."  Huh???  "What?", I ask him, very confused where this is coming from.  "I'm not making ANYMORE robots!"   OOOOkay.  In my head, I'm thinking "What the heck is this kid talking about?"  He goes on to explain, "My bad dream.  I'm not making anymore bad robots 'cause they give me bad dreams.  Only good robots from now on.  NO MORE BAD ROBOTS!"  Ohhhh.  Now I get it.  His dream earlier was about bad robots and apparently he has been "making" bad robots at school.  Now I get it.  Sort of.

My oldest son is upstairs getting ready for bed singing Toby Keith's "Red Solo Cup" at the top of his lungs.  His father hollers up the steps, "Knock it off."  At which point, my youngest, sitting on the floor at the bottom of the steps, playing with Legos, picks up the chorus and begins to sing.  From upstairs, my oldest continues the song... pauses.... my youngest fills in the missing line... my oldest continues.... and so on.  We can't help it.  We burst out laughing.  You have never heard a more original version of this song.  A tone deaf eleven year old and a five year old with speech and communication delays singing together.  Priceless.

To this day, no one in our immediate family can go past the deli counter at a super market without thinking of the classic line, "I like cheese, Pap."  When my oldest son was three, he was very precocious and charming.  Whenever we went to the store together, the ladies at the deli would fuss over him and give him pieces of cheese.  He learned to play this up to get extra slices.  It was adorable yet alarming how he worked these grown women.  One day, he happened to go to the grocery store with his grandfather.  This wasn't his usual grocery store.  As they approached the deli, he loudly commented "I like cheese, Pap."  There was none of the usual response.  No fussing.  No fawning over his cuteness.  No free cheese samples.  So again, louder, he states, "I like cheese, Pap."  No luck.  Still no customary response.  Finally, in a very loud voice, he declares, "I LIKE CHEESE, PAP!"  This finally earns him a grudging, "Would you like a slice of cheese?", to which he replies, "Yes, please." 

It was the first really significant snowfall, the winter my oldest son was two or three years old.  My husband and I were so excited to take him out sled riding.  We all bundled up and headed outside.  Our property is made for sled riding.  Absolutely perfect.  We live on the corner lot, at the top of a pretty sizable hill that slopes down towards our nearest neighbor's house.  Overnight, it had gotten chilly and frozen the new snow into a crisp glaze, perfect for fast sledding.  For the first handful of trips down the hill, my husband rode the sled with my son on his lap, while I took pictures.  It was fast and fun.  After a dozen or so trips, my husband decided that we had a decent "sled groove" cut into the snow.  On the next run, he thought we should let our son go down the hill alone.  Okay.... well, no.  Not okay.  As he went down the hill, the sled began to pick up speed.  Nervously, I realize that without my husband's extra weight, the sled was picking up significant speed.  Just as I broke into a run down the hill, the sled JUMPED out of the sled groove and took off for the road that borders our property.  Now we were BOTH running and screaming (like the sled would hear us and stop!)  over snow and ice glaze.  Just like that... my son and the sled "pop" over the road bank and disappear from view.  AHHHH!  My husband VAULTS over the bank and discovers my son face down in the ditch with the sled on top of him.  Thankfully, we live out in the country, so it wasn't a busy, highly traveled road.  He ended up with a face full of snow, a brush burn down the side of his face, and a swollen eye, that had receded back to normal by the time we made it to the ER, like the crazy first time parents that we were.  At the time, it was the scariest moment of our parenting lives.  Today, in retrospect, the vision of that moment when he popped over the road bank can still cause us to break into fits of giggles.... We are sick people.

My youngest son has always had a special fondness for my one uncle.  Ironically, they live in Baltimore and we only see them a couple times a year.  That never seems to dim his unbridled affection for him.  This year at Christmas was no different.  At suppertime on Christmas Eve, as the whole family assembled, my youngest declared that he and Uncle Mike were going to share supper.  The significance of this is that he and his grandfather have ALWAYS shared dessert.  After a meal, when dessert is served, he climbs up next to his Pap and they eat dessert off of the same plate.  I don't know how it started, but it has been a tradition for the two of them forever.  Apparently, my son felt that it was a great honor or a special bond or something for he and his uncle to eat supper off of the same plate.  Bless his heart, my uncle agreed to it!  For most, this may not seem like such a big deal.  But there are two problems.  One, my son is a terribly gross eater.  His fine motor delays combined with his impulsiveness cause him more often than not to abandon his utensils and resort to eating with his hands.  He can't sit still, so he's shifting around; touching the people around him; in general, getting messy and covered in food.  The second problem, is that my aunt is a bit of a germ phobe.  She doesn't like germs, or mess, or anything unsanitary.  Needless to say, it was a priceless experience to see my uncle share a dinner plate with this messy, gross kid and to watch his wife watch the spectacle.  I still break into giggles every time I think of it. 

It's these moments, these funny little memories, sayings, phrases, or jokes that families share, that make the tough times bearable.  It's these moments that bind you together.  I'm so grateful for moments like these in my life.  I have so many with these men of mine.

Sharing Command

"Go put yourself back to bed."  he tells me kindly but firmly.  I don't want to listen to him, but I don't really have much choice.  I had just had a titanium rod re-implanted in my skull two days before and I was still fighting the effects of the anesthesia.  The room was spinning in a most unpleasant way.  I either needed to go lay down or fall down.  But laying down meant leaving my youngest child, who was currently up in bed coughing and recovering from an asthma attack, in my husband's hands.  The situation left me feeling very out of control, not a feeling I am comfortable with.

We were a couple for ten years before becoming parents.  During that time period, we functioned very well as partners.  It really was a give and take partnership.  That pattern started to change naturally and subtly after the birth of our oldest child.  My husband is a very deep sleeper.  Only the pager going off, wakens him once he has fallen asleep.  If anything besides the pager does wake him, it takes awhile for him to become coherent and functional.  Because of this, and the fact that I was breast feeding and off on maternity leave, it just became easier from the start for me to get up with our son if  he woke in the middle of the night.  Unfortunately, my oldest was never a good sleeper.  That meant that for the first couple of years, I was working full time and up a lot through the night with him.  I resented my husband's full nights of sleep but felt it was my duty as a mother to get up with our son.  That's what mom's do.  Right?

As I have discussed in previous posts, my youngest son has had a way of changing everything in our lives.  He ups the anti so to speak.  Our oldest had just started sleeping better, more consistently through the night, when we had our youngest.  He is a better sleeper than his older brother but has more serious health issues.  I shifted gears from fighting off "dragons" in the middle of the night with the help of the brave and powerful stuffed Pooh bear and Ernie, to delivering medicine and breathing treatments throughout the night in four hour cycles.  When my husband did attempt to help, did I encourage it?  No.  In retrospect, not at all.  They were my babies.  I was taking care of them.  If he didn't know what to do without being told, he should just go back to bed and let me do it.  I may not have verbally voiced it in this way but that was the message that I was sending.  My resentment, frustration, and exhaustion were cementing a very unhealthy pattern.  Did we talk about it?  No.  Did I attempt to change the pattern or ask for help?  No.  Because that's what mom's do.  They take care of their children without complaining or asking for help.  Right?

Wrong.  Recently, my husband and I have discovered that we missed our old patterns of partnership that had existed before we had the boys.  There weren't too many relationships that were stronger than ours back then.  I would bet serious money on it.  We came to realize that we missed working together as a team, whether it be on simple matters or on more serious issues.  It has taken some serious soul searching on both our parts to identify where we went off track.  We have had to make our relationship a priority, not just something that will be sitting on the back burner until the boys are older.  Sometimes that means, I can't be the "Super Mom" image I thought I was supposed to be.  Maybe I won't get all the special treats and goodies baked.  Maybe I won't be the Mom who volunteers to help out for every activity, in addition to working full time.  Maybe my son will go to his brother's soccer game in mismatched clothes because he dressed himself and I didn't feel like making him change.  But won't my boys be better off with a happy Mom, who has a strong, healthy relationship with their happy Dad, rather than an angry, resentful Mom and half-invested Dad. 

Learning to put the care of our boys in the hands of others, especially if they are sick, is difficult for me.  That is something I am working on.  It shouldn't be all that hard.  My husband is an AMAZING father.  He is totally devoted to our boys.  If they grow up to be half the man that their father is, they will be wonderful, successful men.  Developing the ability to step back and let him take the driver seat with their care will not only help his relationship with them, it will benefit ours as well.  It is an exercise in trust. 

The majority of marriages of parents of children with special needs end in divorce.  With this in mind, how many of you are in similar situations?  How many of you are resentful of your husbands involvement (or lack of involvement) with your children's daily care?  How many of you, partly through your own choices, have orchestrated the lives you are unhappily living in?  It's very difficult, and somewhat painful, to take a step back and identify that you are in part responsible for the situations that make you unhappy.  But what can be gained by identifying these patterns today, and making the changes necessary to improve and strengthen your parental and spousal relationships?  I pray that you read this not as a voyeur but as someone who is willing to openly examine the patterns and choices in his or her own life and determine what can be done to make changes for the better in your own life.  We can testify that on the other side of this extremely uncomfortable life examination comes a closer relationship that is better able to weather the rough patches in life.  Parenting and relationships are never easy, but it's the journey that makes them worthwhile.


* I should add the disclaimer that my husband named this particular piece.  He is an officer in the fire service, hence the title "Sharing Command", as in multiple individuals sharing command of a fire/accident incident.  - Didn't want anyone thinking I think I'm in "command".  HAHA 

Hanging on With Both Hands

On our trip to Wal-Mart together, we danced in the aisles to the store music; talked to total strangers like they were our good friends; touched everything in sight; and raced each other to the car in rubber muck boots.  That is a typical day out with my youngest son.  Life with him is a full throttle, hold on with both hands kind of experience.  If you are prepared for the ride, it's a ton of fun.  If you aren't in the right frame of mind, unprepared mentally and physically for that level of intensity, it is exhausting.

Worried about how it will be perceived or received, I often fail to express the overwhelming love, joy,and  happiness that wells up inside of me.  Too often I come across serious and reserved to those that I care about.  My son does not have these inhibitions.  He loves without boundaries or limitations.  Thinking nothing of kissing someone or hugging someone, he offers love unconditionally.  Recently after a luncheon at our church, my son was going down the table kissing and hugging his family members goodbye.  When he got to the end of the table, he encountered a recent widower, who had sat at the table with our family.  Without a moments hesitation, he leaned in and planted a big kiss on his cheek and grabbed him for a hug.  Startled and surprised, the older man looked up and smiled the sweetest smile.  I started to apologize but he laughed and said it was great.  That is my son.  People fall in love with my little man because he offers joy, humor, and entertainment with no strings attached.  He has no agenda.  Life is his agenda.

One of my biggest fears when my youngest started school was that they would make him lose that special "him" that everyone loves.  That special spark.  Have you ever met someone like that?  They are so alive.  So in love with life.  That is my son.  I was afraid that when he started school they would make him conform to their image of how he should be and I would lose what made him so very special.  So far that has not happened.  They seem to love and appreciate him as we do.  I've worried that his lack of boundaries would cause problems with the other kids.  Instead, in his backpack, I keep finding these drawings and letters from the other kids in his class.  When he tells me stories about his friends at school, he doesn't just identify them by name.  He ALWAYS refers to them by "my (name)".  He'll tell me about "my Sally" this or "my Michael" that.  I just pray that these relationships continue to grow in a positive, supportive manner.  If only everyone felt that bond and affection for those around them.  Wouldn't it be a nicer world to live in? 

My son could teach the average person so much about life. He holds nothing back. At the end of the day, he falls asleep within minutes, totally exhausted from the energy he has put into his day. Life is not easy for him, yet he holds nothing back and attacks it with full enthusiasm.  He has little concern for what others think. Instead, he is totally enthralled by the experience of life. As a "Type A" planner, I have had to learn to roll with this; go along for the ride; loosen up and enjoy the moment. That's not necessarily a bad thing. It's probably a very good thing.  I can't wait to see where this journey takes us. 

Judgement

My husband and I were enjoying a rare weekend without the boys.  They were having a sleepover at their grandparents.  We were having a quiet breakfast out by ourselves.  Suddenly, the whole breakfast crowd turned and started staring at a little boy in the restaurant who was crying and throwing a fit.  Each table had a small mind game on it, provided to entertain the customers while they waited for their food.  Apparently, this little guy wanted to take his with him.  He was loudly letting everyone in the restaurant know it.  As everyone turned and stared, I could feel the parents' humiliation as they tried to shush him and move him along out of the restaurant.  My husband and I looked at each other and exchanged a look.  I could read his mind.  We felt for them.  There was a time, when we may have judged them as parents based on their child's behavior out in public.  No longer.  We've been there too many times ourselves since having our youngest child.

Most people that know us, know that our boys are well behaved, respectful and caring young men.  They are also typical children who become tired, frustrated or disappointed.  There have been many occasions when those feelings, paired with tiredness, have led my youngest to act out in public.  On one such occasion, we had decided to take the boys to a local candy store/factory.  It was supposed to be fun and a little bit educational.  Unfortunately, we timed it poorly.  My youngest is now too old for naps but some days would be better off if he still took one.  This was one of those days.  By the time we made it to the candy store, he had fallen asleep in the backseat of the car.  Upon waking, he went into manic bounce mode.  This NEVER ends well.  Pairing that scenario with the over-stimulating experience of being surrounded by every kind of candy imaginable was more than he could take.  He bounced.  He grabbed.  He got loud.  He became frustrated and overwhelmed.  I tried all my tricks.  Redirection.  One-on-one attention.  Distraction.  Verbal cues.  None of it was working.  Finally, I simply picked him up and carried him outside, leaving his Dad and brother to finish looking and shopping.  He and I sat outside until he calmed down.  Once he had regained control, we processed what had happened and what was expected of him.  By then, his Dad and brother had finished and come outside.  He was upset but it was a natural consequence of not being able to function the way he needed to.  We discussed that we would come back for him to try again another day when he was better able to control himself (which we did successfully).

During this episode, I was judged.  Of that, I have no doubt.  I could feel my face become hot and flushed.  It was embarrassing.  You learn to recognize the faces.  THOSE looks.  The ones that say "Wow.  Those parents have no control over that kid."  or "They need to do something about that kid.  He needs a time out or a nap or something."  It's easy to judge if you haven't lived the experience.  I understand.  My son is very tall for his age.  He could easily be mistaken for a child a year or two older than his age.  Unfortunately, developmentally, he functions a year or so below his same age peers.  It would be easy to look at him and see a seven year old behaving like a four year old and make judgements.  They don't know how frustrating it is for him to try to communicate when he is frustrated because it just sort of "jams up his system".  They haven't lived our experience.

Another form of judgement, is the advice offered, usually with a kind heart... but not always.  The implied, "If you would do this, he wouldn't have this problem." or "If you did that, he wouldn't act that way."  Advice is a tricky thing.  If it is given, the person receiving it has a couple choices.  They can use it; ignore it; or listen and modify it.  The giver of advice can then be pleased, unaffected, or offended.  Although advice is usually offered in a loving manner, it is often received in a judging manner.  The receptive feeling is that you, as the parent, are not doing a good enough job.  It is natural to feel that way, especially when you are already questioning every decision you make.  As parents, we are doing the best that we know how given our personal experiences and knowledge. 

Sometimes, it is the comments, often cast off casually, that can be hurtful or perceived as judgemental.  The often heard, "They were really good for us" with that tone.  Or the, "They slept in really late for us", again with that tone.  Or the, "He didn't have a single problem with his breathing while he was with us."  Simple statements.  Innocently delivered.  Heavy on the heart.  Personalization?  Transference?  Possibly.  But also, the feeling that maybe, just maybe, you could be doing better.  Guilt?  Exhaustion?  Probably.  Who knows.  Regardless of the intention, regardless of the source, it is these little moments that make you question  yourselves as parents.  Are you doing enough?  What could you do differently?  These are the questions that keep you up at night. 

So, did you feel for those two parents that morning in the restaurant?  You bet.  But you're also grateful for the lesson learned.  You hope you have learned to be more gentle with the hearts of others.  In addition, you have learned to not take these little moments of peace with one another for granted.  They are few and far between but treasured.  May we continue to be united in our efforts to raise strong willed, active boys into strong, independent, hard working men... If we survive them in the meantime!